The University of Otago's Jessica Young interviewed 14 terminally ill people around NZ about what a good death meant for them. Here she makes a case for assisted dying based on what they told her.

Covid-19 has brought death to the forefront of our minds and prompted us to think about what a good death is in these new circumstances.

Until now, most people haven’t been confronted with their own mortality much, despite death being the common denominator that unites all living beings. It doesn’t end there; dying is on the agenda of this year’s election.

New Zealanders are going to vote whether to ratify the End of Life Choice Act at the election. If the referendum passes, it would allow a person with a terminal illness with a life expectancy of less than six months, who is in an advanced state of irreversible decline in capability, is experiencing unbearable suffering and is of sound mind, to make a voluntary request for a choice over how and when they die.

One of the major concerns with assisted dying is that people who have chosen to die may have gone on to live longer or change their minds about dying at that time. From my research with dying people, what I found was that they all said they would know if and when the time was right for them to choose to die. They thought they can, and should, be trusted to know what’s right and wrong for them when it comes to end of life decision-making.

I was fortunate to interview 14 New Zealanders from around the country, of various ages, backgrounds and beliefs, who have a limited life expectancy due to illnesses such as cancer, chronic lung disease, auto-immune disease, and motor neurone disease. These people have given a lot of thought to their own mortality and what a good death means to them.

They wanted the option of assisted dying to guarantee they wouldn’t suffer at the end of their lives. “When there is nothing left but suffering, I want the choice,” said one man with motor neurone disease. Assisted dying shouldn’t be confused with wanting to die or suicide. These people were already dying. As one woman dying of cancer put it, “I just want to hang in there until I can’t, and then I want to have a peaceful end”.

The people I interviewed have been through so much already – multiple treatments, intense pain, nausea, surgery, declining function, trouble breathing, plus shrinking physical and social worlds. The interviewees said assisted dying was the compassionate choice. As an upside of these difficult experiences, people came to know themselves in a deeper way and what they could tolerate. “You should have the choice of when enough is enough,” another man with motor neurone disease said. Many emphasised they were of sound mind to make this decision.

What makes each person’s life worth living, their purpose, their own version of a good life and a good death, and the important bit in between - dying, is unique. To my interviewees, this means we should each be able to decide what is right for us in accordance with our views on life, so long as it doesn’t harm anybody else. They expected tight regulations to make sure the system was safe for everyone. Deciding if and when to die is not a decision the dying will make lightly.

My views on access to assisted dying are that it should only be made available to terminally ill people who have freely made this decision, have access to, or at least offered, the option of care that meets their needs, and who have a sustained wish to hasten their death.

Motivated by compassion, I support terminally ill people who want the option to hasten their death to relieve their suffering. On behalf of the people I interviewed, I encourage you to do the same. Having looked closely at the international data, I’m confident a system, based on the End of Life Choice Act, can be designed to ensure assisted dying can be managed safely.

The committee of MPs, three from Labor, two from the LNP and one from the Greens, found that, on balance, the Queensland community and health practitioners were supportive of legislating for voluntary assisted dying.

"Tragically, on average around once every four days, someone suffering from a terminal or debilitating condition suicides in Queensland," the report read.

"It remains an option of last resort for people to bring on the end of their lives. Most (62 per cent) of these suicide victims are aged over 60 and almost three-quarters (72 per cent) are males."

Television presenter Andrew Denton flew to Brisbane late last year to convince the Premier to introduce voluntary assisted dying laws before the next election, in case the LNP came to power.

Mr Denton, who became an advocate for voluntary euthanasia after watching his father die a painful death from heart failure, believes there is little chance of a conservative Queensland government pushing the legislation through.

Greens MP Michael Berkman, a member of the committee, agreed.

“The LNP has made clear they oppose VAD, and we can’t risk this issue being put off indefinitely if there is a change of government in October," he said.

"This is yet another reason why the Premier must recall Parliament and ensure it sits as regularly as possible this year, so we can all get on with our jobs."

Queensland Parliament was scheduled to sit this week but under new powers, the government pushed back the next sitting to April 28.

The new powers, rushed through earlier this month, gave Speaker Curtis Pitt the power to suspend sittings until September 17.

Even if the laws were passed this year, the committee said it would take about 18 months
to set up any scheme.

Clem Jones Trust chair David Muir said laws ideally should be drafted and debated in the remaining months of this Parliament and not ignored until after the October 2020 state election.

"We recognise that the State Parliament has scaled back its sitting schedule because of the coronavirus, but other vital issues like VAD should still be addressed," he said.

"Queenslanders expect swift and bipartisan support for the passage of any new laws related to battling the current virus emergency, meaning MPs could devote appropriate time to considering new VAD laws."

Cherish Life Queensland said the state should instead pursue further resourcing for palliative care services rather than the "reckless and dangerous" legislation.

Congratulations to our long-standing member Dame Margaret Sparrow, who was presented with the Ryman Senior New Zealander of the Year award in February. This recognises Dr Sparrow for her decades of service to the field of sexual health and reproductive rights for men and women.

She is equally active in support of voluntary assisted dying and was out on the Petone foreshore on market day recently chatting to people and handing out information leaflets carrying the website address www.referendum.govt.nz This is the site where voters can read the contents of the End of Life Choice Act before they vote on it at the referendum on 19 September. She wants them to be well-informed.

She is also a member of the Doctors’ Group that is part of the End of Life Choice Society and says, ”I think those of us who support end-of-life choice need in turn to have the support of a group of doctors that firmly believes in it, because there is so much opposition to it from other quarters.”

Seventy-two percent of Māori say they will vote in support of the End of Life Choice Act at this year's referendum, according to a new poll revealed by The Hui on Sunday.

The has been controversial, with MPs casting conscience votes on whether or not the Act - which would legalise euthanasia under strict circumstances - should progress.

For Māori MPs, one of the most divisive discussion points was whether or not assisted euthanasia is a transgression of tikanga Māori.

The Hui's poll, which was undertaken by Horizon Research, shows that 58 percent of respondents did not believe the End of Life Choice Act was incompatible with tikanga Māori, and 55 percent felt that for the terminally ill, choosing to die was an act of tino rangatira/self determination.

The poll surveyed 543 Māori and has a margin of error of ±4.3 percent.

A new study has dispelled concerns people who choose euthanasia are driven by social or economic vulnerability, researchers say.

The average age of people who received euthanasia in Ontario was 74.4, versus 77 for all people who died in the province during the study period.

A new study has dispelled concerns people who choose euthanasia are driven by social or economic vulnerability, researchers say.

The research, published in the Canadian Medical Association Journal, found those who accessed euthanasia tended to be younger, wealthier, more likely to be married and far less likely to live in an institution than members of the general public who died during the study period.

Of the 2241 people who chose to die with medical assistance in the Canadian province of Ontario between June 2016 and October 2018, 74 per cent were receiving palliative care from a physician or nurse, according to the study.

This suggested a request for euthanasia was unlikely to be driven by social or economic vulnerability, the researchers said.

New Zealanders will vote in a referendum later this year on whether the End of Life Choice Act should come into force. The Act, put forward by Act MP David Seymour, passed its third reading last November and would give people with a terminal illness the option to access assisted dying subject to certain conditions.

Supporters say people experiencing harrowing pain should have the choice to end their life with dignity, while opponents, including many in the palliative care sector, have argued opening the door to euthanasia could result in the vulnerable, aged and disabled being coerced or feeling pressure to end their lives.

A spokeswoman for Seymour said the Canadian study showed palliative care provision and assisted dying could work together, and the evidence should allay fears vulnerable groups would be at heightened risk.

ACT MP David Seymour has championed the End of Life Choice Bill.

"People who use assisted dying laws are overwhelmingly those who have had choice over their lives, and are now suffering from a terminal illness and seeking choice in how they die."

Nurse Maude Christchurch hospice palliative care service manager Jane Rollings said she strongly opposed the End of Life Choice Act "because I do not wish killing to be legalised in New Zealand".

In her 18 years caring for people with life limiting illness, Rollings could only recall a handful of patients who expressed a desire for euthanasia. "Of these patients, what really drove the desire was fear."

"The acknowledgement of these fears, the acknowledgement of the value and worth of these amazingly brave people's lives and their contribution to society and the gentle guidance through their fears of what might happen to their dying body, alleviated any such desire for intentional death."

There was inequity of access to good palliative care in New Zealand, she said, and there needed to be sufficient funding so it could be provided to everyone who needed it

Medically assisted dying was legalised in Canada in June 2016. As of October, 2018, 6749 Canadians had accessed euthanasia.

For the study, researchers analysed clinical and socioeconomic data from 2241 people in Ontario who received euthanasia and data from all 186,814 people who died during the study period.

Of the people who accessed medically assisted dying, the average age was 74.4 versus 77 in the general population and they were more likely to live in a higher income neighbourhood. Almost two thirds of patients had cancer, 12 per cent had a neurodegenerative disease, 8.5 per cent had cardiovascular disease and 7.5 per cent had respiratory disease.

The researchers said people who chose euthanasia reported physical or psychological suffering as the primary reason, despite three-quarters of patients receiving palliative care. This suggested for many patients requests for euthanasia were not because of poor access to palliative care, they found.

Dr Phil Bagshaw, founder of the Canterbury Charity Hospital but speaking in a personal capacity, said he was not aware of the quality of palliative care or access in Canada but cautioned against drawing any comparisons with New Zealand.

Bagshaw opposed the End of Life of Act. "It's a basic tenant of medicine that doctors are there not to terminate life, but to alleviate distress and cure where they can," he said.

"I think that euthanasia is a mistake, and easy access to good palliative care is the way to go, it's as simple as that."

* An earlier version of this story incorrectly stated this year's referendum question would ask whether euthanasia should be legal in principle. The referendum will ask if the End of Life Choice Act should come into force.

It was just after 2pm on October 31 when oncologist Cameron McLaren arrived at Phil Ferrarotto's house on the outskirts of Melbourne to help him die.

Dr McLaren had never administered a fatal drug to a terminally ill patient before. He was struck by the magnitude of what he was about to do.

Oncologist Cameron McLaren CREDIT: JUSTIN MCMANUS

“I had no idea if I was going to be OK with it even up to the point where I put the needle to his arm,” Dr McLaren said. “But there was no question that this was the right thing to do for Phil. It was what he wanted. It was kindness and it was a mercy.”

Phil hadn’t eaten for days. No longer able to digest his medication, the 70-year-old was hooked up to an intravenous morphine drip and sustained by spoonfuls of cola-flavoured ice.

He lay in bed with his daughter Katie and wife Dorrie curled up on either side of him. They cuddled his frail body and watched his chest rise and fall with each painful breath.

His son Glen and son-in-law Ryan came into the room with three glasses of aged Glenfiddich whisky; one for each of them and one for Phil.

Dr McLaren found a vein and inserted a cannula. He used the thin tube to inject a sedative medication, before administering an anaesthetic and a muscle relaxant.

Phil began to drift off within minutes of the drugs flowing into his bloodstream. The circle of his family closed in around him. They held his hands and told him how much he was loved. “Be happy,” Phil said, before he took two final, deep breaths.

Dr McLaren has helped two dozen terminally ill Victorians apply for permits to end their lives since the state’s voluntary assisted dying laws came into effect on June 19. Eleven of them have since died using the legislation.

All the patients Dr McLaren has assessed so far were in intolerable pain and often bedridden.

“The number one reason people are doing this tends to be more the existential suffering,” Dr McLaren says. “It is the loss of joy, the fear of losing dignity and the fear of losing autonomy and of being a burden to family.”

Cancer-stricken patients surrender their bodies to years of treatment they know will cause them pain and discomfort, Dr McLaren said. He wants to give people control at the end of their life.

“It is one last decision about their body which is entirely theirs,” he said. “This is something we do for animals and when they get too old and they are suffering greatly. We put them out of their misery and we call it humane. Why shouldn’t we afford humans the same humanity?”

When Dr McLaren first met Phil he was sitting in an armchair in his living room hooked up to an oxygen concentrator. The cancer had spread from his bladder to his lungs and had riddled his bones. Then it invaded his liver, causing his belly to swell and fill with fluid. Opioids prescribed to Phil did little to dull his pain. Each breath was agony.

This kind, strong-willed, clever, retired general manager, who had battled four different kinds of cancers over the past 18 years, was frank and direct.

He told Dr McLaren he wanted to end his own life.

Dr McLaren carefully assessed Phil. He ticked off all the strict criteria; over the age of 18, of sound mind, an Australian citizen with less than six months to live. He referred Phil on to a second doctor who also deemed Phil eligible for the scheme.

Before his application was approved an email from Phil arrived in Dr McLaren’s inbox: "This gives me no pleasure in begging you to end my life, but I have no one else to turn to. I’m struggling with every breath I take and I can’t do it anymore.”

A permit for a doctor-administered death was approved the same day by the Voluntary Assisted Dying Board with Dr McLaren agreeing to administer the fatal dose.

For days after Phil died, Dr McLaren was waiting for the “hammer’s fall”.

"I was really concerned about the fallout for me, personally and emotionally,” he said. “I was concerned about being recognised as ‘that’ doctor and the impact it might have on my family and my work.

“I didn’t question what I did, because in Phil’s case, he was in the last days of his life and he was going to die within 48 to 72 hours. I was able to provide him a death that in his mind was dignified. It didn’t cost him anything. It cost him his suffering.”

The fallout never came.

“It was a lonely experience because there’s no literature review you can read on it,” he said. “It still does feel lonely because there's not a lot of us doing it.”

The night Phil died, Dr McLaren picked up his two year-old daughter when he got home and held her in his arms. His love for his child overwhelmed him and he pressed his face against hers.

“As I was holding her I thought of Phil being surrounded by his family as he took his final breath,” he said.

"Nothing that we could have done would have avoided his death, but we were able to make sure Phil died at home in the arms of the people who loved him most. I thought, yeah, that would be a nice way to go.”

Before he died, Phil wrote a letter to Dr McLaren thanking him for what he was doing:

Currently 70% of New Zealanders think they will cast a referendum vote in favour of the End of Life Choice Actl becoming law.

30% will vote No to the actl becoming law, according to the first nationwide poll of eligible voters on referendum voting intentions, since the bill passed in Parliament.

The survey was conducted independently and in the public interest by Horizon Research.

The act would make it legal for people to request assisted dying, or euthanasia, from doctors, and legal for health practitioners to help people die under certain conditions.

The result of the referendum, being held in conjunction with the 2020 general election, will be binding.

The survey of 1,521 adults was conducted between November 17 and 28. Results were weighted to represent the 2018 census adult population. At a 95% confidence level, the maximum margin of error is +/- 2.5%.

The survey shows support for end of life choice has largely held at levels measured before the bill was passed. It was last measured by Horizon at 74% in April. The removal of “not sure” and “don't know” answer options has consolidated opposition, up from 18% in April 2019 to 30% now.

While concern has been expressed about the law potentially exposing some elderly to risk, 72% of those aged 65 to 74 and 61% of those aged 75+ say they intend to vote Yes to enact the act. Among those aged 75+ opposition is highest of any age group at 39%.

By age, the Yes vote peaks at nearly 78% among 45-54-year-olds.

Party voters' positions

By party vote at the 2017 general election, support is highest among ACT voters (93% yes, 7% No). Results for other parties' voters are: Green 78% Yes/ 23% No, Labour 75% Yes/ 25% No, National 67% Yes/ 33% No and NZ First 68% Yes/ 32% No.

The results are weighted by age, gender, employment status, educational qualifications, personal income and regional to ensure a representative sample of the adult population at the most recent census. At a 95% confidence level, the maximum margin of error is +/- 2.7%.

The enduring majority for end of life choice:

This review of seven years of Horizon polling results shows the enduring majority medically assisted dying has had in New Zealand. It also links to a report showing Horizon's results have been consistent with those of other research firms.

At the 2020 General Election you will also get to vote on whether the End of Life Choice Act should become law.

The Act would make it legal for people to request assisted dying, or euthanasia, from doctors, and legal for health practitioners to help people die under certain conditions.

It won't become law unless a majority vote yes in next year's binding referendum.

Who can ask?

An option to ask for assisted dying would mainly be open to those who have been diagnosed as terminally ill and with less than six months left to live.

How would assisted dying actually work?

Patients must request it themselves and go through a series of checks with two doctors, including one appointed through the Ministry of Health.

A patient completes a form and if they meet all the criteria, they can pick a time, place and method for how they want to die. They have six months to use it and if they don't, they have to go through the whole process from the start.

Patients can choose whether to have the drugs delivered intravenously, by mouth or tube and whether to trigger it themselves or have a doctor or nurse do it at a place of the patient's choosing, including at home.

Health practitioners are allowed to opt out of participating in any part of the process, though they must advise how to find advice, and the Act states they're not meant to be penalised by their employers for doing so.

Patients are allowed to change their minds at any point.

They were then asked: “At this time do you think you will vote Yes or No in the referendum?”

Western Australia’s move to legalise voluntary assisted dying continues a worldwide trend supported by a clear majority of New Zealanders, the End-of-Life Choice Society’s President, Dr Mary Panko, said on Wednesday.

The Western Australian parliament voted Tuesday to join the state of Victoria in allowing terminally ill adults with less than six months to live who are suffering unbearable pain to get medical assistance to end their misery. The law will come into effect after an 18-month implementation period.

It means nearly nine million Australians will join more than 200 million people in Europe and the Americans with enlightened legislation allowing the ultimate human right of the 21st century – the right to die with dignity.

New Zealanders will vote at a referendum next year on whether to approve the End of Life Choice Act passed by 69 to 51 votes in Parliament on November 13. Scientific opinion polls have consistently shown about two-thirds of New Zealand voters are in favour, Dr Panko said.

She said the Western Australian law was similar to that proposed in New Zealand whereby a doctor can prescribe and administer the lethal medication if the patient wishes. In Victoria, patients must take the dose themselves, but Dr Panko said that in all cases, the key word was “voluntary”, only people who were certified to be actually dying would qualify and there were strict safeguards to protect the vulnerable and participating medical staff.

MPs exchanged hugs and onlookers in the public gallery burst into applause as the lower house on Tuesday spent more than five hours approving the last of 55 amendments to the government's bill before rising.

WA is the second Australian state after Victoria to legalise voluntary assisted dying, with the scheme expected to be implemented in 18 months.

Health Minister Roger Cook, who oversaw the bill's introduction and was applauded by MPs on both sides for his handling of the process, choked back tears as he welcomed the passing of the legislation.

"We are at the end of a very long process, a momentous process for the West Australian parliament and West Australian public," he told the chamber.

"It's not a time for jubilation.

"Everyone knows what this legislation is about. It's about reflection. And to reflect that we've chosen compassion and the right to choose."

More than 180 hours were spent debating the legislation in parliament, mostly in the upper house where it was heavily amended.

Terminally ill adults in pain and likely to have less than six months to live - or one year if they have a neurodegenerative condition - will be able to take a drug to end their lives if approved by two medical practitioners.

"This is an extraordinary piece of legislation," Mr Cook said.

"Western Australia is not known for its progressiveness in terms of its legislative reform.

"I'd like to think we've come a respectable second (to Victoria)."

The parliamentary debate was often heated, with many MPs critical of Premier Mark McGowan for pressuring the upper house to get on with passing the bill.

MPs were granted a conscience vote and Labor backbencher Adele Farina was among the final dissenters in the upper house.

The premier hailed the passing of the bill as a significant moment for the state.

"Today we showed that at least in Western Australia, we can do big things," Mr McGowan said.

"And in this parliament we have big, compassionate hearts and we're willing to take some political risks to do the right thing.

"For those of you who are worried about your own futures and don't want to die that way ... we thank you for your unwavering support.